there is a difference

It doesn’t get easier.  In fact, as weird as it may seem, I almost think it is more difficult now than before.  For those of you that have children, you’ll be able to relate.  Remember, I love nothing more than being a mother and but when you have a newborn – it is nothing like you think.  You are not prepared for the sleepless nights, the crying, the feeding, the crying, the feeding, the crying, did I mention the sleepless nights? – you are exhausted… then they’re crawling and reaching  – the responsibility increases, you can’t take your eyes off for a minute.  You think,  ” if only they were just crying and feeding”…then they’re walking and talking and you think “oh, it was so easy when they were only crawling”…you love this time as you watch your child grow but the more time passes, the less time you have to teach them, to establish the very important foundation that sets the stage for the rest of their lives.  The more time passes, the more challenging it gets. There’s no “right” way to do it, you just do the best you can. 

Well, here we are.  We were given a gift, a child, october 21, 2007 – the sands through the hour glass began day one after coma.  The re-birth and all the stages, now add brain injury. I understand and feel the stress related to the fact that we have a two year window to get as far as we can get. The emotional pressure is overwhelming at times, but it is not the first time we’ve felt pressure.  No, as parents we feel the pressure and carry the ultimate responsibility for our child’s success, happiness and well being from day one.  Not all parents feel this way though.  Some comfortably turn their backs at some point and say “have a nice life, I did my job”.  Yeah, that’s not me.  Right or wrong, I will always feel the pressure.  I don’t know why…  

You probably have a pretty good idea now of what our scheduled days are like -here’s where we sit inside that schedule:

Cognitive or thinking problems – very different from emotional problems. Cognitive problems are difficult to rehabilitate and alot of rehab professionals encourage patients to use compensatory strategies. Like using the planner/journal and other back ups. I’m not a professional - so I work with Mike to rely on the planner but more so, to work toward rehabilitating his shattered mind until it can’t be rehabilitated anymore.  Then, we use compensatory strategies.
Reduced arousal – resulting from damage to the parts of the brain that control alertness.  Takes longer to get going, takes longer to move from one thing to the other. The ability to focus or concentrate on something is different from arousal.
Attention – Mike may be fully awake and alert and still have difficulty concentrating on his environment or on the task he is performing. He will often require frequent reminders to re-focus his attention to the task at hand.
Memory – difficulty with day-to-day memory. That’s a BIG one, but getting better.
Insight – the part of the brain that controls self-awareness is damaged (right hemisphere). This can be very frustrating for all of us including Michael. Although you can present him with evidence, many times even that does not increase his insight. This condition is not under his control so it is important to realize that he is not being difficult or deliberately trying to avoid admitting his problems. It’s that HUGE right hemisphere damage.

Executive Functioning: examples of executive functions include planning strategies to reach goals, implementing those strategies, being able to switch strategies if current ones are not working (not so good at that), preventing irrelevant or inappropriate thoughts from becoming distracting, being able to see “the big picture,” being able to deal with new situations, etc. The executive functions are among the most complex thinking skills that humans have. Mike has always been a good talker – still is. So just talking to him, his problems may not be very obvious. This is because these problems are most apparent when he actually tries to do something. Executive dysfunction can be very disabling.

Agitation: Mike can be very restless and sometimes aggressive.
Anger/Irritability: Not just with Emily anymore. Seeing more of the short temper or short “fuse.”
Initiation: Although I am definitely seeing improvement, Mike may need to be cued several times to do an activity or accomplish a task. And honestly, there are times when he may not do anything unless reminded or encouraged. It doesn’t mean he doesn’t want to do it…he either forgets or gets distracted.

Physically – he is strong but there is still some weakness. Working on stiffness through his upper body and balance is still a little off but I have no doubt he will conquer all of his physical injuries.

We had our family reunion this weekend, someone asked me if Michael gets depressed. Depressed? I don’t think so, but sad at times? Yes. He gets lonely and misses hanging out with friends but wow…this circle of friends has been through sooooo much.  It seems like “life interrupted” should be our banner t-shirt for the group. 

He is as motivated as he can possibly be. He doesn’t give up, he hasn’t given up but there is a difference.  Pray for us as we approach the one year mark of this young man’s new beginning.  We have been blessed beyond measure -  we pray for continued healing.

xxoo

Happy 19th Birthday Emily! 

I hope you dance like there’s no one watching and love like you’ve never been hurt.